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9/5/01

This seems to be the longest time we've gone without an update. Sure hope you all had a nice summer. We have had a great one with Savanna. She is so much fun and developing quite the personality.

She's now 16 months, 30 inches tall, and 19+ lbs. So that means, among other very low birth weight premature girls, she is in the 65th percentile for weight, 85th for length, and 75th for head circumference based on her adjusted age (12mths at charting time). Certainly is making up for her slow growth in the beginning! Among typical girls she is in the 7th percentile for weight (or 17th using adjusted age). Her length is 17th (or 60% adjusted age). Obviously growth is going very well for Savanna. And boy is she a good eater! There isn't too much she doesn't like. We've been trying dairy again the past week and so far so good.

Even though Savanna's growth has been excellent, as well as her development, the gastroenterologist still feels she may have a 'mild' case of Shwachman-Diamond Syndrome due to her neutropenia along with some other immune deficiencies. We really thought we were past all this, but at least they are just saying 'mild' for now.

Her neutrophils went up again when they were last tested on 8/23. Her ANC (absolute neutrophil count) was 1463. So close to the minimum of 1500! We are still waiting for results on some other tests they did that day (immunoglobulins and chromosome). She also recently had her eyes checked and they're looking great! Her kidneys will be checked again this month. Hopefully they are continuing to improve.

After finally finding excellent doctors that are very knowledgeable and familiar with Savanna's neutropenia and possible Shwachman-Diamond Syndrome, we have been forced to find a new hematologist and gastroenterologist because our previous doctors were no longer contracted with our insurance company. Unfortunately, we are in a financial situation that we cannot pay the extra to continue with these doctors. We are very sad and hope that Savanna's care isn't jeopardized.

Shortly after the last update, Savanna met her friend Allison. Allison has been very special to us because she was born at 25 weeks gestation and her mommy's (Deanna) pregnancy story was very similar to ours. Allison has come a very long way. It was really special to see the two angels meet. It was also very gracious of our friends (Peggi, Dave & Lauren) to host this event. Allison's family lives in New York.

We just recently attended Savanna's neonatal reunion at Good Samaritan Hospital. It was wonderful seeing all the many special people that helped Savanna survive. Plus it was great showing them Savanna so they can see how far she has come. What a fabulous bunch of talented and caring people. We will forever be grateful for what they did. We also got to see many of the other preemies that were in the NICU when Savanna was there!

Savanna may be walking any day now! Until then, she is mastering climbing up and down the stairs (a favorite of hers), walking (and steering) with her activity walker, and crawling faster and faster in a variety of ways. "Dog" is still her favorite word and she loves to "meow" at any animal. She's also starting to eat with a fork and spoon and drink from a sippy cup. Such a big girl!

Wow this is getting long! Guess that's what happens when so much time passes between updates.

A few more summer happenings with our family:
We went on vacation in mid-August to Derek's parents place in Kohler, Wis. It was very nice and relaxing. We got to bring the cats and dogs too. Unfortunately while we were there, Hershey took a turn for the worse and her liver was failing. We took her to a vet there and they confirmed that there was not much more we could do and she only had a couple more weeks at most and it would only get worse. So we made the extremely tough decision to put her to sleep. Poor Hershey. :( She was 13 1/2 years old and had quite the tough life - many physical ailments. But she sure was a trooper and hung in there much longer than anyone expected. She is buried in a beautiful spot in the woods in Kohler.
We also built a pond in our yard (birthday present for Marybeth). Finally our turtle had a mansion to live in! The turtle loved it! However, while we were on vacation, the turtle left the pond. After 22 years, finally get a pond, and poof! All the neighborhood kids on the lookout.

Anyway, that's our update. Sorry it was so long.
Marybeth

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